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ALLEYCATTUS's Photo ALLEYCATTUS Posts: 2,055
7/12/15 10:09 A

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I also take Tamoxifen and have very painful joints, weight gain, high blood pressure and menopausal symptoms... also memory loss... I feel positively senile on my bad days... I hate it... but I am trying to get to grips with it...I have 1 year of Tamoxifen left and then they are switching me Arimidex...We shall see how it all goes...


Better to light a candle than to curse the darkness

Love has nothing to do with what you are expecting to get, it's what you are expected to give -- which is everything
Hugs,

'Kat from Cyprus


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MSSNOWSHOE's Photo MSSNOWSHOE Posts: 491
7/13/09 7:53 P

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RO2LOOSE, many thanks for your posting. Your information is helpful!
I am happy your memory has improved. I had such a problem with mine after chemo.
Wishing you the best!
Colleen emoticon

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Accept yourself as you are. Otherwise you will never see opportunity. You will not feel free to move toward it; you will feel you are not deserving.
Maxwell Maltz
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The great end of life is not knowledge but action.
Thomas H. Huxley
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RO2LOOSE's Photo RO2LOOSE Posts: 253
7/13/09 11:04 A

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Hi Colleen,
I had ER+ BC and only lasted 6 months on the Tamoxifen. The onc took me off as it started to effect my cognitive abilities...the other side effects like creaky joints and return of hot flashes (although I had had a complete hysterectomy 5 yrs previously and gone thru surgically induced menopause then) were bearable, but not onset of senility ;o). About 6 mos after discontinuing the Tamoxifen my cognitive funcition returned. I'm not on any other med and am 2 1/2 yrs out from BC. My daughter was doing research w tamoxifen at an ivy league medical school and told me the cognitive side effect is not uncommon but has not been researched much. Most do fine on Tamoxifen. If concerns arise, don't let them slide, contact your oncologist. best of luck and hugs across the miles.

Edited by: RO2LOOSE at: 7/13/2009 (11:05)





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ROXANNEGREY's Photo ROXANNEGREY Posts: 419
7/12/09 7:13 P

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What a fabulous attitude, Karen! Before BC, I should have had the same appreciation for life that I have after BC.

Roxanne

It is good to give thanks to the Lord and to sing praises to Your name, O Most High; To declare Your lovingkindness in the morning and Your faithfulness by night.
Psalm 92:1-2

For I am about to do something new. See, I have already begun! Do you not see it?... Isaiah 43:19


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KARENAZ's Photo KARENAZ Posts: 312
7/12/09 7:04 P

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My breast cancer was triple negative, which means it was progesteren, estrogen, and Her2 negative. So I have mixed feelings, I can't take any medications like Tamoxifen to try to stop recurrence, but I don't have to deal with the side effect of those meds either.... I just choose to be positive and active and embrace life and pray for the best.

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MSSNOWSHOE's Photo MSSNOWSHOE Posts: 491
7/7/09 10:43 P

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Hi Tammy;
Isn't it nice having it behind us?
Thank you for sharing. My mother had a mastectomy when she was 50. No chemo ro radiation and took Tamoxifen without side effects.(She's still going strong at 88)
Smiles,
Colleen

_____________________

Accept yourself as you are. Otherwise you will never see opportunity. You will not feel free to move toward it; you will feel you are not deserving.
Maxwell Maltz
------------------------------------
The great end of life is not knowledge but action.
Thomas H. Huxley
_____________________
www.the3day.org/goto/colleenokelly


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TLCHEEK's Photo TLCHEEK Posts: 154
7/7/09 10:15 P

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Hey Colleen!

Congratulations on your recent anniversaries! It has only been 2 1/2 years since my diagnosis and I look forward to the gap widening between then and now. I am also on Tamoxifen (for 2 years now) and have not encountered the specific issues you are referring to although I can certainly attest to it NOT making weight loss any easier. :P

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Tammie

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ROXANNEGREY's Photo ROXANNEGREY Posts: 419
7/7/09 8:30 P

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It's for breast cancer that might have traveled to lung, liver, brain, or bone in amounts too small to detect on MRIs and scans. The Tamoxifen then keeps these distant breast cancer cells from developing into tumors. Breast cancer that metastasizes to the lung is still breast cancer, not lung cancer.

After all the treatment you have had to your chest area, there is probably little chance of a recurrence there. The Tamoxifen is to prevent a recurrence anywhere else.

You are definitely not only a survivor, but a thriver. You inspire the rest of us. Thank you.

Roxanne

It is good to give thanks to the Lord and to sing praises to Your name, O Most High; To declare Your lovingkindness in the morning and Your faithfulness by night.
Psalm 92:1-2

For I am about to do something new. See, I have already begun! Do you not see it?... Isaiah 43:19


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MSSNOWSHOE's Photo MSSNOWSHOE Posts: 491
7/7/09 7:57 P

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A quote from breastcancer.org
Tamoxifen, the generic name of Nolvadex, is the oldest and most-prescribed SERM. Tamoxifen is approved by the U.S. Food and Drug Administration (FDA) to treat:

women diagnosed with hormone-receptor-positive, early-stage breast cancer after surgery (or possibly chemotherapy and radiation) to reduce the risk of hormone-receptor-positive breast cancer coming back (recurring)
women and men diagnosed with advanced (metastatic) hormone-receptor-positive disease to produce regression and remission of the disease

My question is: is Tamoxifen only for breast cancer? Am I missing something. Trust me, I've spent many hours reading, I have a fantastic relationship with my medical team. I've had four months of Chemo, transfusions, 12 weeks of radiation and five operations in 3 1/2 years. I am a survivor.

Thanks for the input.

_____________________

Accept yourself as you are. Otherwise you will never see opportunity. You will not feel free to move toward it; you will feel you are not deserving.
Maxwell Maltz
------------------------------------
The great end of life is not knowledge but action.
Thomas H. Huxley
_____________________
www.the3day.org/goto/colleenokelly


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ROXANNEGREY's Photo ROXANNEGREY Posts: 419
7/7/09 5:58 P

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You hit the nail on the head, Brenda. The Tamoxifen, Arimidex, and Femara keep residual cells in the body from multiplying...they prevent metastasis if the tumor was estrogen receptive. These drugs suppress estrogen production in the body, starving out those tumor cells. They all have yucky side effects. Your oncologist can advise you when it is safe to go off them or if there is another drug alternative.
Roxanne

It is good to give thanks to the Lord and to sing praises to Your name, O Most High; To declare Your lovingkindness in the morning and Your faithfulness by night.
Psalm 92:1-2

For I am about to do something new. See, I have already begun! Do you not see it?... Isaiah 43:19


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GATOR12's Photo GATOR12 Posts: 4,655
7/7/09 11:22 A

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I can give you just another first person. I, too, had bilateral, the left just as preventative, because of fibrocystic disease. I was on tamoxifen for almost 3 years and my oncologist switched me to Arimidex. I have been very lucky to have almost no side effects other than the increased hot flashes at first. I was 51 y.o. at time of mastectomies and cancer dx. and am 59 now. Because it has been so long I can't remember as well but I am pretty sure I was taking the Tamoxifen as a preventative to keep down ovarian or the possible residual cancer cells in my body from multiplying. Like the reason I had radiation was to prevent chest wall cancer. They switched to Arimidex because in some studies it was tho't to be more effective in tx. of post-menopausal women. Hope this is correct and useful. But do please check with your physician. brenda

Brenda


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MSSNOWSHOE's Photo MSSNOWSHOE Posts: 491
7/7/09 7:02 A

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Good morning Roxanne;

I took Tamoxifen for a year then was diagnosed with breast cancer in the other breast. My oncologist switched me to Femara. The side effects were terrible. Next was Aremidex. Same terrible side effects. So, back to Tamoxifen.

CRVO is when the retinal vein is blocked. It caused hemorrhaging in my retina. One morning I awoke with blurred vision, loss of vision and "floaters" in the effected eye. My treatment was an injection into the retina. NOT a good experience. I see an Ophthalmologist every six weeks.
In recent reading of Tamoxifen, I see that one side effect can be clotting in the retinal vein.

I'm wondering why I am taking Tamoxefin when I no longer have breasts. I will be discussing this with my oncologist. I was hoping to hear first hand experiences and thoughts on the subject.

Thank you so much for your response!

Colleen emoticon

Edited by: MSSNOWSHOE at: 7/7/2009 (07:18)
_____________________

Accept yourself as you are. Otherwise you will never see opportunity. You will not feel free to move toward it; you will feel you are not deserving.
Maxwell Maltz
------------------------------------
The great end of life is not knowledge but action.
Thomas H. Huxley
_____________________
www.the3day.org/goto/colleenokelly


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ROXANNEGREY's Photo ROXANNEGREY Posts: 419
7/7/09 6:22 A

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Good Morning Colleen,
It has been 16 months since my BC diagnosis and, like you, I had bilat. mastectomy. I am taking Femara. I am not familiar with CRVO. How does this affect your eyes?
Roxanne


It is good to give thanks to the Lord and to sing praises to Your name, O Most High; To declare Your lovingkindness in the morning and Your faithfulness by night.
Psalm 92:1-2

For I am about to do something new. See, I have already begun! Do you not see it?... Isaiah 43:19


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MSSNOWSHOE's Photo MSSNOWSHOE Posts: 491
7/6/09 11:53 P

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The week before Labor Day will be my four year and three year anniversaries of being diagnosed with breast cancer. I had a bilateral mastectomy with reconstruction 12/3/08 and I'm still taking Tamoxifen.

Question 1)If you have had a bilateral mastectomy, are you taking Tamoxifen?

Question 2) If you are taking Tamoxifen, have you ever had central retinal vein occlusion, (CRVO)?

I'm looking forward to your answers.
Thank you!
Colleen emoticon

_____________________

Accept yourself as you are. Otherwise you will never see opportunity. You will not feel free to move toward it; you will feel you are not deserving.
Maxwell Maltz
------------------------------------
The great end of life is not knowledge but action.
Thomas H. Huxley
_____________________
www.the3day.org/goto/colleenokelly


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